Hello I'm new here

Hi everyone

4 weeks ago when I was on holiday I had the sudden onset severe headache and nausea just as I was about to get on a boat to a remote Scottish island. The skipper of the boat had a blue light ambulance there within 10 mins. They found out I had a sub arachnoid haemorrage due to a 10 mm PCOm berry aneurysm that had blown.

Since I was 42 I have been having headaches, altered vision and I have gradually been going blind.my current opthalmologist has CTd me and didn't use contrast as he thought it might be a space occupying lesion. He couldn't find one on the CT ( which was antiquated) . For the last 3 years he has been treating me for borderline glaucoma and had done nothing about my gradual blindness. He just grunts at me when I see him and if I ask questions he just tells me that structurally there's nothing wrong with my eyes.

I really need some advice. Should I seek a second opinion from a neuro opthalmologist? Does anyone know whether these two conditions might be linked. If the blindness is caused by something pressing on my optic nerve is it reversible? I'm so worried and I feel like the problems getting worse and nobody is doing nothing about it?

8 Replies

  • Hi Silmarillion

    Sounds to me like it's time to have a proper tantrum.

    Make your opthalmologist refer you to a neuro opthalmologist.

    In the meantime ring the Headway helpline tomorrow.

    There may well be nothing at all wrong with the structure of your eyes but your eyes are not the problem. It's your brain.

    Forgot to say welcome.

    Love n hugs


  • Yes Sil, I'm with Random on this. And if your ophthalmologist won't refer you to a neuro-ophthalmologist then see your GP for a referral.

    Welcome from me too ! Cat x

  • Welcome Silmarillion, I am with random and cat on their thoughts. Also were you advised what area of your brain the subarachnoid haemorrhage occurred?

    It is certainly a big worry that your opthalmologist just grunts at you and gives stock standard answers to your questions. A second professional opinion is highly recommended. I am not a neurologist or dr... but I know from personal experience that your occipital region needs to be assessed as this is the visual part of the brain that is the neural pathway to your eyes. Hope all goes well for you. Claire xx

  • Welcome aboard, Silmarillion, I was about to say that you're asking the 'right' people here, but then I remembered that my GP has just referred me to standard opthalmology, despite my optician's letter clearly stating it was a neurology referral that was needed... another day-trip to a new hospital department, to be told there's nothing structurally wrong with my eyes... I KNOW that!

    Before my first aneurysm ruptured, in February 2015, I'd been plagued by a lifetime of photosensitive hemiplegic migraines, and my GPs, along with all of the scans and such I had in my teens, had always looked at fixing the migraines as they happened, with painkillers, and triptans and such, never really finding the root cause. My spectacles-prescription is negligible, my last optician told me she wouldn't really push me to wear specs, but the pink tint on the almost-plain-glass lenses seemed to cut the frequency of the attacks.

    When the first aneurysm blew, they found two others lurking in there, the second was coiled in March of this year, and the third is currently too small for surgery, and in a 'risky' position. My eyesight has deteriorated since the initial rupture, more 'visual disturbance' than actual loss of sight, but it's still fairly debilitating, I'd sort-of worked it into my 'new normal', but thought that my specs-prescription might need changing. (Always one to look for an easy-fix, and there aren't often easy-fixes, with a complex bit of kit like a brain.)

    What you need to try to do is chase-up your neuro-aftercare appointments, I imagine every authority has its own time-scale, I think I was seen by the consultant something like 4 months after my haemorrhage, but that was after three cancelled-at-short-notice appointments. The NHS saved most of us, but it doesn't really communicate very well between departments, your opthalmologist might be a really good opthalmologist, but, working in isolation, and ONLY 'doing' eyes, it's a bit like asking a plumber to sort out an electrical fault. (Sorry to any plumbers...)

    'Our' eyes are structurally fine, we know that, but, having had historical vascular issues in the brain, it's possible that you're in a similar position to me, in that the scarring, or the damage, or the surgery, or the remaining aneurysm in my case, are disrupting the blood supply to the retina. (In my case, I live in a weird, 'spangly' world, and I dread to think what the neighbours think I'm doing in here, because I open and close my curtains a disturbing number of times a day, depending on whether I can tolerate the light-from-outside.)

    Stamp your feet, and stand your ground, you've had a neuro-issue, so you need neuro-advice.

  • I agree with all the above posts. Please demand to see the neuro. Sounds like the opthalmologist is trying to fob you off and thats not good enough. Good luck.

  • If all else fails, get a different GP.

  • Or see another GP at your surgery, if that's possible. I managed it by deliberately choosing the days when "my" GP wouldn't be in.

  • I have demanded to see a neuro- opthalmologist with my current grunting opthalmologist and my GP and other GPs They have all said NO..So I got a new GP and I explained why I needed to see a neuro-op and I even gave her the name and address of a local one. She said she is going to refer me to opthalmics and they can refer me on to neuro opthalmics.....so back to square one! Its very stressful.

    So my sight problem started about 4 years ago. I started having a lot of weird episodes where I was getting floaters and migraine type auras 3 or 4 times a day....and I developed a left hemianopia. This progressed to episodes where my sight went completely for short period on account of the visual disturbances on several occassions and I ended up in emergency, and my sight returned. Then the 3 day severe migraine type headaches started. After that my sight has been gradually going downhill and I am probobly at the point where I could be registered as being partially sighted......if they had some kind of diagnosis that is.....

    So the most recent events find me having a SAH . I have a fusiform aneurysm on my left internal carotid/ PCOM artery. As you say Clare61 this is in the occipital region. This artery is also in very close proximity to the optic nerves and there are research articles online that outline people becoming blind as a consequence of fusiform arteries pressing on the optic nerve and it seriously affecting the visual fields without it really affecting the internal structures of the eye..

    So in the meantime my sight continues to go downhill....

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